I was interested in the factors that others take account of. Following my second attack in March 05, I am eligible (in the UK) to start one of the ABCRs. The marketing info of the drugs companies, and some of the research, or personal experience of those taking these drugs, do not always square up. So my first decision, in discussion with my neuro will be which one? The difference in efficacy is not that much so I assume it comes down to how many injections each week etc.
My decision process went something like this (I should note that I'm only sharing my experience and I'm not qualified to give any direct medical advice)...
My neurologist handed me information pamphlets on the 3 ABCs that were available then back in late '99, discussed some of the different parameters of them, i.e., different injection schedules, stated that they all had about the same effectiveness, and then asked me to make a choice. I was also presented with the option to be part of the antegrin study group with a 33% chance of being on placebo (though not much seemed to be widely known about it in 1999-2000). Hmm, as you've discovered it's an overwhelming decision.
My first step was to obtain the doctor's prescribing information for each of the ABCs along with a medical dictionary and looked up every bit of medical lingo I didn't understand. During this process I even discovered some information that my neurologist was unfamiliar with, e.g., that Copaxone was found to be clastogenic in a mutagenesis assay (it has the potential to cause breaks in DNA). Anyways, after that I spent somewhere around 6 months learning about MS from textbooks but mostly by reading journal papers including ones focused on the ABCs (working in a cell biology research lab helped a great deal with access to published articles).
After all of this, I chose not to be in the study due to the existence of treatments with known efficacy and I chose to go with Avonex. My choice was based primarily on injection frequency (ruling out Copaxone) and the lack of injection site reactions, Betaseron's literature described the reactions as "injection site tissue necrosis." My first Avonex injection put me through the wringer with the worst flu that I can recall having. Biogen's "Tylenol advice" didn't work for me and I found that ibuprofen was much more effective
. Still, I dealt with pretty bad side effects for a bit longer than others seem to though they always clear up within a day of my shot. They lasted about a year and then tapered off during the second year. Now after 5 years I still feel a little tired the next day however I consider these side effects to be trivial in comparison to those I had during that early period.
In hind site, I'm still happy with my choice especially after reading about the problems some folks suffer with Copaxone and lipoatrophy and the knowledge shared with me by a nurse who stated that intramuscular injections have an absorption rate of about 80% while subcutaneous injections are only around 40%. I have also declined my neurologist's suggestion to try mitoxantrone due to its cardiotoxicity (what good is having a brain if your heart doesn't work). One of my few problems is that I'm starting to notice that my hair is a little thinner than it used to be (one of Avonex's stated side effects). To augment Avonex's roughly 30% effectiveness, I've done a bit of research into complementary "alternative" therapies and have devised a regimen for myself that I've described in another discussion thread
. This regimen is something that's constantly under development as I learn about new things, e.g., I'm currently considering adding n-acetyl-cysteine and turmeric to the regimen but I may need to get some more blood work done first.
Anyways, I hope that sharing my experience has been helpful for you in your decision making process. If I had to go through it all over again I might still choose Avonex however I would strongly consider getting in the Tovaxin trial if there was some guarantee I would not be on placebo (doubtful I know due to the double blind nature of most trials).